May is Neurofibromatosis Awareness month

[ChazII]

I was wondering if there are any other DUers who have this genetic disorder or if they have family members with NF. My son had NF 1 and died from a glioblastoma brain tumor in March of 2020. There are studies being done linking some glioblastoma brain tumors with Neurofibromatosis. My son's neuro-oncologist reached out to an NF clinic while he was being treated by her.

[Biophilic]

1. A million years ago, give or take a few, when I was in 8th or 9th grade

my father had to give a speech. It was very, very prestigious and he was asked to give the talk because he was one of only a handful of people who were considered authorities on the condition. I remember night after night, at the dinner table, listening to him talk about his speech and how it was going. It was NEVER NF, only 'neurofibromatosis' pronounced fully and correctly. My brother, sister and I had to learn to say it correctly. I think it went on for several months. No one else had ever heard of it. Now it has a month. Hopefully, all this means is that there is a lot of support and help for patients and their families.

I'm really sorry to hear about your son. You have my sincerest thoughts.

[ChazII]

2. Thank you. Your post shows how far research has come in just these past few years.

When my son was first diagnosed in 1986 there were not many people in the medical field who knew about it let alone pronounce it correctly. I think it was 1990 when it was discovered that chromosome was the cause for NF1 and chromosome 22 was the cause for NF 2. There is more support now than in the past.

Facebook offerers several support groups which is one of the reasons I won't give up Facebook. Everyone who does have neurofibromatosis is able to pronounce it. Also, more primary care doctors know about this genetic disorder yet still many have to be educated. Support is extremely lacking in schools.